Nicole

[Jennifer]

Welcome to the site! I hope you find it helpful and supportive. Would love to hear your story if you get a chance!

:welcome

[verdon2]

:cheer :yipee :cheer :yipee Hello! Looking forward to hearing your story....:yes

[Nicole]

hi

[Nicole]

Hello my name is Nicole and my daughter Noelle is 4 1/2 months old. Here is my story. After we brought her home from the hospital we noticed that she always looked to the right, our ped told us to change everything around and hopefully she would started looking to the left. She eventually did however that is when we noticed the flat right back and side of her head. We also noticed in the early months that her forehead was a little forward and one eye was definetly bigger then the other. Our ped told us that it would round out. Then I noticed a bump near her right ear and again my ped told me not to worry however I did and thank god I did. I pressed him on some issues like the helmet and he told us about the specialist. So we went thinking we were going to have to do the helmet which we were upset about. Then that is when my happiness went away, the plastic surgeon told us that on her right side where the bump was that her coronal fused together and she needed surgery but we had to wait until she was 7 or 8 months old. We are doing a CAT scan this wed. and I am scared to death. I feel like why is this happening and I am scared that she could die, did anyone else feel this way. I feel like I can't even smile anymore and I am so sad and scared. I don't know how I am going to get through these next few months, how did all of you get through this? I think I should go talk to someone, did any of you? I am so glad I found this site and I need so much support I feel like I am falling a part. Thanks for listening about my beautiful daughter Noelle. I look at her and she looks so good to me and no one notices her assymetry it is not very noticeable unless I point out a few things like the forehead and eye.

Any advice, coping skills, dr I should look into ( I am from Pittsburgh, PA) anything at all I would appreciate I am just starting to learn about this and would love any advice.
Nicole

[craniomommynbaby]

First of all,
:hugg and :welcome

Your fears are all natural, and we have all been there or are there. The folks on this board are wonderful and will be here when you need to cry, vent, complain, worry, etc. We are also here for the victories and celebrations. Doug here likes to refer to this as the cranio rollercoaster, and we are all on this ride together.

If you need some reassurance about all this, I had surgery to open my right coronal suture when I was only 2 months old, and now I am happily married math teacher. My son was born with both coronal sutures fused and had surgery at 6 months old. He is going to the cranio clinic for a post-op check tomorrow. He had a bit of a rough spot after surgery and needed therapy for hypotonia (low muscle tone) as well as extra calories for extremely low weight. He quickly caught up and is now a very tall and solid walker at nearly 15 months old.

This condition is treatable, and the statistics say that the surgery is safer than the car ride to the hospital for the surgery. Many of us found that it helped to read the stories and look at the pictures found on the site to know what to expect. If you would like to know more about my situation, feel free to e-mail me at craniomommynbaby at yahoo dot com.

Take care, and feel free to post any and all questions as you have them.

[Katie]

:hugg It is defenitely a very scary thing to know our little ones have to go through such a major surgery, especially for some one who may not have heard of craniosynostosis before the diagnosis. Cindy is right, though it is a major surgery, statistics prove that complications are extremely rare. Dillon's craniofacial surgeron has been performing these surgeries for 40 years and has never once lost a patient. Both Dillon's cousin and aunt had craniosynostosis treated by surgery and they are both doing wonderuful.
I'm so glad that you found us, and hope you can take some comfort in knowing there's a place where you can come for support :hugg
It certainly couldn't hurt to talk to your doctor about how your feeling, he.she may be able to refer you to a councelor or maybe prescribe something mild to calm your nerves.

[Jennifer]

Nicole~
Again, welcome to the site. I'm glad you found us. This site was a lifesaver to me when we were going through it all (my daughter had her right coronal fused). Please know what your feeling is completely normal.:hugg It is soooo scary. But these babies are absolutly amazing and come out like such troopers. I truly believe it is harder on us that it is on them. Please know that we are here for you. Vent your concerns, worries, stresses (and we love to hear the joys too!). We've been there or are there also. It helped me knowing someone else truly knew what I was going through.

It sounds like everything is on track... Your getting a CT to confirm things (though when you described Noelle, it sounded like you were describing my Emily)... You've met w/ your NS (and PS?).

The wait seems like forever-- but remember to take the time and just enjoy your daughter (alot easier said than done...but try). Her strength will amaze you.

Good luck at your appointment on Wednesday... please keep us posted!

Again- Welcome! Glad you found us! I hope we can help.:hugg

[Doug]

Welcome Nicole! Many :hugg to you and your family. It sounds like you and your family are on your way up the first big hill (you make one comment about rollercoasters and it doesn't go away, but it sums it all up). I know that everything is new and pretty scary, but I hope you can find some comfort in knowing you not alone in this. You have done well so far, being persistent with the Dr. You'll find that you will have to continue to be, for you are the one who needs to be beautiful Noelle's voice. Hope to get a chance to know you and Noelle more. Hang in there momma, you're doing great. Welcome, again!

[Nicole]

Thanks for all the support. It is so nice to hear from people that actually know what I am feeling and going through. I am seeing the opthamologist tomorrow, they said they will put drops in her eyes to dialate them and see if there is pressure from her brain. If anyone ever did this, how did it go? Any advice or can you tell me how your little one did with the drops? do we have to hold her down for this? Also for the CAT scan they told me last meal 6 hrs before and she can have pedilyte 2 hrs before, any advice on this? Also how long is she out, they told me it was like a light sedative. Thanks and sorry for all the questions. Nicole

[Katie]

Don't worry about the question, that is what we are here for! Dillon has had the drops before, and he did just fine. We did have to hold him still for the drops, but once they were in they didn't bother him at all. Noelle may be a little sensetive to light once you go outside, so you may want to take a blanket you can coverher carrier with.
The seadtion for the CT is pretty light, Dillon has had several and we haven't had any complications from the anesthesia. We would spend about 1/2 to 1 hour in the recovery room each time so the nurses could make sure he woke up OK and could hold down fluids. She may wake up a little bit nervous about being in a strange place, but you can give them something that soothes her before she goes back (like something musical she loves) and they will make sure she has it as she's waking up. Once she's in the recovery room, they will come get you so that you can sit back there with her. Noelle will be a bit floppy, but that's just because she will still be sleepy from the sedative. They are usually able to get the babies to sleep with a little bit of gas, so there aren't often any pokes. In most instances, we were at the hospital for a total of one and a half to two and a half hours, from the time we get there and sign in, to the time we take Dillon home. Once we get home, Dillon is usually back to his old self pretty quick.
Hope that helps! :hugg

[KALEMSMOM]

OMG I can't believe I missed this post. Welcome aboard Nicole. I'm sorry to hear that your little Noelle has craniosynosotis but as many moms have mentioned this is a very treatable condition. I know it's easier said than done. Rest assured that you have found a great group of people for support. My son had his cranial vault reconstruction done 3 months ago for metopic synostosis and is doing fabulous. He was a little delayed developmentally in the beginning but since his surgery, he's surpassed many milestones and continues to do so everyday. These little ones are so strong. She will surprise you. Please ask away any questions, this is definetely not an easy road but one that with help and support you will get through. Hang in there and HUGS to you and your family.

My son also had to have his eyes dilated and he did fine. Unfortunately, I can't help you with the CTscan questions as I nursed Kalem and he fell right to sleep so he didn't need to be sedated. Hope all goes well and keep us posted.

[plukids]

Welcome Nicole! Sorry this comes a little delayed! My daughter had surgery at 11 months for left coronal and metopic synostosis. I had terrible fear feelings as well. I visited CranioKids often to post for support and read previous posts. It helped so very much ! I would not have made it if not for the wonderful people here! The eye exam we have not had yet. The CT was hard. We tried without sedation first without luck. We had to go back for the sedation and she did beautiful. It was nerve racking but Sylvie did well. We're here for you! Post often and PM me if you have questions or want to chat!

[Nicole]

I am currently looking into going to Texas to meet with the Doctors who do the surgery endoscopely (Doctors JImenez and Barone). I met with my Dr.(PS) here in Pittsburgh at Childrens hospital and he really had not good things to say about the procedure however a couple other dr. I spoke with told me endo. is the way to go. The only down side to endo is that Noelle would have to wear a helmet probably until she is 1 yr. old. I am very torn b/w the two, does anyone have any input on why they did not go the endo route or have you read anything, pro or cons? I would appreciate any information. Thanks Nicole

[Katie]

I'm not too familiar with the endoscopic strip procedure, as Dillon's case would not have qualified for it, but you may want to talk to Faith. Her son had the strip repair for saggittal craniosynostosis, and they were pretty happy with the results. If I can think of any other member who has gone the endo route, I'll let you know! :hugg

[Nicole]

Why did Dillion not qualify for the endo route? who told you that he could not have it? and if you could have done it do you think that you would have? Nicole

[Katie]

I should have worded that better, the NS never actually said Dillon couldn't have it, it was an assumtion we made. Dillon had multiple suture cranio, facial asymmetry because one coronal fused at a faster rate than another, his head grew very tall and bulged to the left, disfigured orbitz, and several other features that gave him what was referred to as a "unique" case. I read many succesful stories involving single suture cranio, but didn't see any incolving bi-coronal and metopic.
If Dillon would have had a single fusion, we defenitly would have weighed the pros and cons of and endo strip versus the traditional surgery. We were very fortunate in having Dr. Zakalik and Dr. Ian Jackson there to treat Dillon, so we felt very comfortable in knowing he was in good, experienced hands. I can't say enough good things about them.
I did some looking around an found an article that is pretty detailed on how a strip is performed, including pictures, I hope this helps you a little. Dr. Jimenez has a very good reputation and I'm sure he will be completely honest with you about weather or not Noelle would make a good candidate for the endo strip, as well as go over what advantages and disadvantages there may be in it over the traditional route. :hugg
Here's the article:
http://www.neurosurgery.ufl.edu/FacultyPage/synostosis.pdf

[craniomommynbaby]

My son had surgery for bicoronal, and he was not a candidate for the endo procedure either. The surgeons said that the reconstruction needed was too much to be successfully done by the endo procedure and a helmet. His ns actually trained some of the surgeons who do the endo procedure and will refer eligible cases, so I knew that he was not just trying to keep my business. Simon's forehead was very tall, and his eye orbits needed to be moved 1 cm out. He started showing signs of hypotonia (low muscle tone) about 2 months before the surgery and drastically lost weight at the same time. Once he had the surgery and started therapy, he did a dramatic turn. Now, he is a very active 15-month old who is walking and getting into everything. I do not think the endo procedure and helmet would have helped him turn around so fast.
I guess I could sum this up that the endo is done in cases not needing a good deal of reconstruction. Also, it is usually done before 6 months of age.

[Jennifer]

Here's the article:
http://www.neurosurgery.ufl.edu/FacultyPage/synostosis.pdf


Katie- I read through some of the article and it was very interesting. I had never seen a breakdown of the % and stuff.....The pictures showed great results. Do you think we could add this to the 'resourses' section?

[Katie]

Do you think we could add this to the 'resourses' section?

:yes I'm on it!